Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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If you have a fracture, insurance should cover Forteo, Tymlos or Evenity. I am on Tymlos. I recently posted an article that confirmed that the bone-building drugs like those three, are most effective if they are the first drugs used, not a second line after Prolia or biphosphonates.

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@cmt

My doctor has prescribed Prolia as I have severe osteoporosis and a compressed fracture in my back.
I cancelled the appointment once but just rescheduled with hesitation. I just found this site and it has been helpful to be able to hear from others who are going through the same thing.

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I have osteoporosis and several years ago my doctor put me on Prolia (I also have a compressed fracture in my back). I have had no problems at all with the drug, no side affects, no pain. I had been on Fosamax for I think 10 years before this. I am thrilled with my success on Prolia - a 6% increase in bone density. I have a bone density study scheduled for August. I admit I did not do a lot of research when I started and reading now that it seems I need to be on it for life (I am 70) is concerning. I will discuss with my doctor at my next appointment what the future might hold. Its obviously a really important decision for you, good luck.

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@ellenos

I have osteoporosis and several years ago my doctor put me on Prolia (I also have a compressed fracture in my back). I have had no problems at all with the drug, no side affects, no pain. I had been on Fosamax for I think 10 years before this. I am thrilled with my success on Prolia - a 6% increase in bone density. I have a bone density study scheduled for August. I admit I did not do a lot of research when I started and reading now that it seems I need to be on it for life (I am 70) is concerning. I will discuss with my doctor at my next appointment what the future might hold. Its obviously a really important decision for you, good luck.

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Thank you for your comments and glad to hear Prolia has been helping you. I researched some and that is why I canceled the first appt. as I read all about possible side effects. Glad I have connected now so I know I am not alone with the dilemma.
I am 75 and a caregiver for my partner, so I need to do something to help myself so I am able to care for him. I will have the first infusion June 8th.

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If you stop Prolia, there is a quick drop in bone density and high risk of fracture, so you have to go on something else. This could be Reclast or another biphosphonate.

Among my docs' patients, those who have severe osteoporosis and a fracture go on a bone-building drug first (Forteo, Tymlos or Evenity) first. As I posted previously studies are showing that the sequence of drugs matter and it might be better to do an anabolic before an anti-resorptive. In other words, if you go on Prolia first, then the other drugs may not work as well.

I am curious about those who say they will stay on Prolia forever. My friend's doc took her off Prolia after several years due to risk of atypical fracture from many years of suppressing bone turnover, as well as dental issues. Are some people hearing from docs that it is okay to stay on past 5-10 years?

@cmt I would ask for Tymlos or Evenity. Insurance should cover it but these can still be expensive. Together with Tymlos would help get free Tymlos if you meet income guidelines. Tymlos comes in a pen with 8 clicks and you can start with two or four clicks and move up, to minimize side effects.

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I was diagnosed with osteoporosis three years ago and developed MRONJ after the first Prolia shot. Since then I have not used any osteoporosis medications and I am wondering if Medicare covers Forteo or Tymlos after a patient has had MRONJ.

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@scpartain

I was diagnosed with osteoporosis three years ago and developed MRONJ after the first Prolia shot. Since then I have not used any osteoporosis medications and I am wondering if Medicare covers Forteo or Tymlos after a patient has had MRONJ.

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Yes I would think so. Tymlos does not cause MRONJ. It grows bone but does not affect resorption/turnover. Insurance will cover Tymlos if you cannot take Prolila or biphosphonates (both of which can cause MRONJ). It is terrible that you developed this after one shot!

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@windyshores

If you stop Prolia, there is a quick drop in bone density and high risk of fracture, so you have to go on something else. This could be Reclast or another biphosphonate.

Among my docs' patients, those who have severe osteoporosis and a fracture go on a bone-building drug first (Forteo, Tymlos or Evenity) first. As I posted previously studies are showing that the sequence of drugs matter and it might be better to do an anabolic before an anti-resorptive. In other words, if you go on Prolia first, then the other drugs may not work as well.

I am curious about those who say they will stay on Prolia forever. My friend's doc took her off Prolia after several years due to risk of atypical fracture from many years of suppressing bone turnover, as well as dental issues. Are some people hearing from docs that it is okay to stay on past 5-10 years?

@cmt I would ask for Tymlos or Evenity. Insurance should cover it but these can still be expensive. Together with Tymlos would help get free Tymlos if you meet income guidelines. Tymlos comes in a pen with 8 clicks and you can start with two or four clicks and move up, to minimize side effects.

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The truth is that there's more to bone health than density, as we know, and all of the drugs for osteoporosis have side effects that need to be considered carefully until safer drugs become available. And, in the meantime, we can try to do anything we can to stave off, or even reverse, osteoporosis wherever possible. One study I read looked at the anomaly of bone fractures and questioned what factors other than density come into play and can be improved, e.g, 'tensile strength of bone' v density. The analogy was to comparing the real strength of bamboo scaffolding (having the ability withstand shock and movement) versus the iron and concrete that cannot. To me, conceptually, the issue that bone density is only part of the story makes sense and might suggest other, future avenues for treatment beyond the current drugs.

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I had my first Prolia shot for osteoporosis last February and am due in August for 2nd shot. Finally I found an article that was precise in explaining the risks. I will go forward with Prolia treatment. I am 71 and will probably stay on for life.

Shared files

Prolia and MRONJ (Prolia-and-MRONJ.pdf)

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